Sunday, January 6, 2008

Well we have the MRI rescheduled. The date for it is the 28th of January. Guess what day that is?

The exact same day last year that we were admitted for Rhett's Morgagani Hernia. Two days later was when he was overdosed.

I am just thrilled to be putting him under general anesthesia on this date.

NOT.

Can we say panic attack.

We are out of options though. He has to have it done so that we have the results before our Prelitigation Hearing in February. They don't have any earlier dates for it, and we can't do it later. So the 28th it is.

Sigh.

I am hoping that he stays well. He has been acting off the last few days, and has developed a weird rash. He has had heart rate issues with his heart beating at 165. This coming from the kid famous for Bradychardia with a heart rate dipping to 45 worries me.

I called his cardiologist on Friday and he said to watch him over the weekend, and if it continued to bring him in on Monday and they would do another 24 hour holter monitor test on him. Since it has continued this weekend guess what we get to do tomorrow.

This isn't the way I planned on starting the new year. I was hoping for no hospital time in January or February. We seemed to struggle during these months when we are there.

For those that don't remember; Rhett is going in for an MRI on his brain to check for any damage from when he was overdosed, as he has shown some symptoms of neurological damage. He is also having an MRA done on his neck to check for instability in the spine. He will also have an Cine MRI done on his upper airway to give us some clues as to exactly where he is obstructing when he has his apnea episodes at night. This will give us a for sure answer as to whether or not we should take his tonsils and adenoids out. If we do that it means a PICU stay for sure, and I don't want it done unless we know that it will help. His ENT couldn't guarantee that it would help, he only gave me a 70% chance of it helping, and I didn't want to put Rhett through something else if it wasn't guaranteed to work. The Cine MRI will tell us for sure if they should come out.

Because of his apnea being so severe he can't go under regular sedation.

So as the 28th creeps closer please keep us in your prayers that Rhett does well, and has the procedure done without any complications, and that mom and dad have the sanity and strength to be at the hospital on this day.

I'm sorry you have to go on that same stinking day. Wow you sure have alot happening hopefully it is all getting done now so you can just enjoy the rest of the year!! Keeping you in my thoughts and prayers!

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The Down Syndrome Creed

My face may be different but my feelings are the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach you to love, as God in the heavens looks down from above.

To Him, I'm no different His love knows no bounds; It's those here among you in the cities and towns, that judge me by standards that man has imparted, but this family I've chosen, will help me get started.

For I'm one of the children so special and few, that came here to learn the same lessons as you. That love is acceptance, it must come from the heart; we all have the same purpose, though not the same start.

The Lord gave me life to live and embrace, and I'll do it as you do, but at my own pace.